Bottom Line:
We sought to characterize consumer willingness and unwillingness (reticence) to share PCHR data across health topics, and with different stakeholders, to advance understanding of this issue.Pediatric patients and their families are often willing to share electronic health information to support health improvement, but remain cautious.Robust trust models for PCHR sharing are needed.

Background: Data stored in personally controlled health records (PCHRs) may hold value for clinicians and public health entities, if patients and their families will share them. We sought to characterize consumer willingness and unwillingness (reticence) to share PCHR data across health topics, and with different stakeholders, to advance understanding of this issue.

Methods: Cross-sectional 2009 Web survey of repeat PCHR users who were patients over 18 years old or parents of patients, to assess willingness to share their PCHR data with an-out-of-hospital provider to support care, and the state/local public health authority to support monitoring; the odds of reticence to share PCHR information about ten exemplary health topics were estimated using a repeated measures approach.

Results: Of 261 respondents (56% response rate), more reported they would share all information with the state/local public health authority (63.3%) than with an out-of-hospital provider (54.1%) (OR 1.5, 95% CI 1.1, 1.9; p = .005); few would not share any information with these parties (respectively, 7.9% and 5.2%). For public health sharing, reticence was higher for most topics compared to contagious illness (ORs 4.9 to 1.4, all p-values

Conclusions: Pediatric patients and their families are often willing to share electronic health information to support health improvement, but remain cautious. Robust trust models for PCHR sharing are needed.

Figure 1: Percent of participants reporting they value specific functions of the PCHR.

Mentions:
Patient perceptions about the value of the PCHR focused mainly on personal control over and access to health records (Figure 1). Large percentages of respondents also reported valuing the PCHR as a tool for interacting with or sharing records with other providers or institutions. When asked to indicate which single function was most important of the many they valued, 64.7% chose unlimited access to their record, followed by centralizing health records (9.1%). Value selections were not associated with child age, health status, length of treatment at the hospital, history of sharing, or willingness to share information with public health or an outside provider. No clear pattern was evident in associations among specific value areas and other factors, including number of children in a household, race or income. Interest in keeping the record was not uniformly associated with perceived value areas.

Figure 1: Percent of participants reporting they value specific functions of the PCHR.

Mentions:
Patient perceptions about the value of the PCHR focused mainly on personal control over and access to health records (Figure 1). Large percentages of respondents also reported valuing the PCHR as a tool for interacting with or sharing records with other providers or institutions. When asked to indicate which single function was most important of the many they valued, 64.7% chose unlimited access to their record, followed by centralizing health records (9.1%). Value selections were not associated with child age, health status, length of treatment at the hospital, history of sharing, or willingness to share information with public health or an outside provider. No clear pattern was evident in associations among specific value areas and other factors, including number of children in a household, race or income. Interest in keeping the record was not uniformly associated with perceived value areas.

Bottom Line:
We sought to characterize consumer willingness and unwillingness (reticence) to share PCHR data across health topics, and with different stakeholders, to advance understanding of this issue.Pediatric patients and their families are often willing to share electronic health information to support health improvement, but remain cautious.Robust trust models for PCHR sharing are needed.

Background: Data stored in personally controlled health records (PCHRs) may hold value for clinicians and public health entities, if patients and their families will share them. We sought to characterize consumer willingness and unwillingness (reticence) to share PCHR data across health topics, and with different stakeholders, to advance understanding of this issue.

Methods: Cross-sectional 2009 Web survey of repeat PCHR users who were patients over 18 years old or parents of patients, to assess willingness to share their PCHR data with an-out-of-hospital provider to support care, and the state/local public health authority to support monitoring; the odds of reticence to share PCHR information about ten exemplary health topics were estimated using a repeated measures approach.

Results: Of 261 respondents (56% response rate), more reported they would share all information with the state/local public health authority (63.3%) than with an out-of-hospital provider (54.1%) (OR 1.5, 95% CI 1.1, 1.9; p = .005); few would not share any information with these parties (respectively, 7.9% and 5.2%). For public health sharing, reticence was higher for most topics compared to contagious illness (ORs 4.9 to 1.4, all p-values

Conclusions: Pediatric patients and their families are often willing to share electronic health information to support health improvement, but remain cautious. Robust trust models for PCHR sharing are needed.